Podcasts about fanconi anemia

Send us a textMeet Nikki McCarthy! She's the mother of of Sam, who was diagnosed with Fanconi Anemia, a rare genetic blood disease that leads to bone marrow failure. Nikki started Sam's Fans in honor of her daughter, and I'm so grateful that we crossed paths via Jacquie Mahan from The Awesome Company.If you want to learn more about this incredible organization please go to https://www.samsfans.org

In this week's episode we'll discuss outcomes following hematopoietic stem cell transplantation in pediatric patients with Fanconi anemia. Then, we'll learn about how new research shows that the transcription factor Foxo1, commonly associated with glucose metabolism, regulates hepcidin expression and systemic iron homeostasis. Finally, in Latin America: using clinical networks to improve outcomes in patients with acute promyelocytic leukemia. After clinical networks were established, survival and relapse rates improved substantially, highlighting the effectiveness of this unique intervention strategy in low- and middle-income countries.Featured Articles: Outcomes of hematopoietic stem cell transplantation in 813 pediatric patients with Fanconi anemiaFoxo1 is an iron-responsive transcriptional factor regulating systemic iron homeostasisClinical networking results in continuous improvement of the outcome of patients with acute promyelocyticleukemia

Caregiving is hard! In this episode of Navigating Cancer TOGETHER, Talaya Dendy dedicates the show to caregivers and features Allison Breininger, founder of The Negative Space. Allison shares her journey as a caregiver for her husband diagnosed with Fanconi Anemia (FA), a rare genetic disease leading to multiple cancers. She discusses the underappreciated role of caregivers, the importance of acknowledging their efforts, and the support systems she established through her non-profit. The episode covers the emotional and logistical burdens caregivers face, offers practical advice, and highlights the significance of having accessible mental health resources.✨Highlights from the show:[01:58] Allison's Personal Caregiving Journey[04:30] Challenges and Realities of Caregiving[09:26] Impact of Cancer Diagnosis on Caregivers[12:57] Mental Health and Support for Caregivers[17:16] Basic Needs and Advice for New Caregivers[23:57] The Guilt and Challenges of Caregiving[26:49] The Media's Portrayal of Caregiving[32:08] Practical Self-Care Tips for Caregivers[37:06] What NOT to Say to Caregivers[38:55] The Importance of Acknowledging Caregivers[42:14] The Negative Space: Resources and SupportReflection: As a caregiver, how did this episode make you feel? Did it resonate with your experiences as a caregiver? If you are someone who has had a cancer diagnosis, how did it make you feel? Have you had a conversation with your caregiver?

Allison Breininger has an MA in Education and spent twenty years in the realm of education. At 31, she became a caregiver for her husband, Sean, when he was diagnosed with the rare genetic disease Fanconi Anemia. She has been by his side through countless treatments and experienced firsthand that caregivers are in what she calls ‘the negative space': vital yet overlooked and unsupported. In this episode, Allison shares why caregivers are part of the story and need to be recognized, why the oxygen mask analogy falls short, what tried and true tools help her in her caregiving life, and why ‘brightsiding' is detrimental for care advocacy and caregiver wellness. Show notes with product and resource links: https://bit.ly/HHCPod181 Receive the podcast in your email here: http://bit.ly/2G4qvBv Order a copy of Elizabeth's book Just for You: a Daily Self Care Journal: http://bit.ly/HHCjournal For podcast sponsorship opportunities contact Elizabeth: https://happyhealthycaregiver.com/contact-us/ The Happy Healthy Caregiver podcast is part of the Whole Care Network. Rate and Review the podcast: https://bit.ly/HHCPODREVIEW

Allison Breininger has an MA in Education and spent twenty years in the realm of education. At 31, she became a caregiver for her husband, Sean, when he was diagnosed with the rare genetic disease Fanconi Anemia. She has been by his side through countless treatments and experienced firsthand that caregivers are in what she calls ‘the negative space': vital yet overlooked and unsupported. In this episode, Allison shares why caregivers are part of the story and need to be recognized, why the oxygen mask analogy falls short, what tried and true tools help her in her caregiving life, and why ‘brightsiding' is detrimental for care advocacy and caregiver wellness. Show notes with product and resource links: https://bit.ly/HHCPod181 Receive the podcast in your email here: http://bit.ly/2G4qvBv Order a copy of Elizabeth's book Just for You: a Daily Self Care Journal: http://bit.ly/HHCjournal For podcast sponsorship opportunities contact Elizabeth: https://happyhealthycaregiver.com/contact-us/ The Happy Healthy Caregiver podcast is part of the Whole Care Network. Rate and Review the podcast: https://bit.ly/HHCPODREVIEW

Are rare diseases themselves rare? Neil deGrasse Tyson and comedian Chuck Nice learn about the science of gene therapy and how it can treat and potentially cure rare diseases with Gaurav Shah, CEO, Rocket Pharma.NOTE: StarTalk+ Patrons can listen to this entire episode commercial-free here: https://startalkmedia.com/show/unlocking-gene-therapy-with-gaurav-shah/Thanks to our Patrons Ernesto Rodriguez, James Lewandowski, Juan Cornejo, Shane, Hayden Christensen, jacob vine, and Calina Lungu for supporting us this week.

Send us a Text Message.Allison Breininger, an experienced educator with an MA in Education, took on a new role at 31: caregiver for her husband, Sean, who was diagnosed with the rare genetic disease Fanconi Anemia. Throughout the past eleven years, she supported him through a bone marrow transplant and various cancers. This journey made Allison realize the lack of support for caregivers, leading her to establish the non-profit, The Negative Space, to transform caregiver perception and assistance.The unexpected twist in their lives significantly challenged their resilience and threatened their dreams. Despite this, Allison's dedication to her husband and herself remained a shining light amidst uncertainty. As a resilient caregiver, she navigates the delicate balance between productivity and self-care amidst challenges. Her powerful story showcases the impact of love and resilience in adversity.In this episode, you will be able to:Find practical strategies to overcome caregiver challenges and get the support you need.Discover how caregiving affects mental well-being and learn practical steps for maintaining a healthy mindset.Discover the value of a strong support network and see how it enhances your caregiving journey.Discover ways to find rest and relaxation while caregiving.Discover tips for managing caregiving while prioritizing your well-being.About Allison:Allison Breininger holds an MA in Education and spent two decades in various roles within the field. At the age of 31, she became a caregiver for her husband, Sean, who was diagnosed with the rare genetic disease Fanconi Anemia. Throughout the past eleven years, she has supported him through a bone marrow transplant and battles with cancer affecting his tongue, throat, gums, bladder, and skin. This firsthand experience has shown her the vital yet overlooked and unsupported role of caregivers. Motivated by her insights, Allison established the non-profit organization, The Negative Space, to change the perception and support for caregivers.Through The Negative Space, Allison sheds light on caregiving realities, offers direct services to caregivers, and educates and equips their supporters with practical tools and strategies. She co-hosts the In Sickness podcast, provides individual coaching nationwide, facilitates support groups, partners with organizations, and sells caregiver gift boxes.Connect with Allison Website TwitterInstagramFacebookLinked InPodSupport the Show.Confessions of a Reluctant Caregiver Sisterhood of Care, LLC Website: www.confessionsofareluctantcaregiver.com Like us on Facebook! Tweet with us on Twitter! Follow us on Instagram! Watch us on Youtube! Pin us on Pinterest! Link us on LinkedIn!Tune in on Whole Care Network

Russ Holder is a golf professional, a former caddy for Bernhard Langer, and the founder and CEO of Caddy For A Cure. As the son of a pilot and an ardent fan of the Blue Angels, Russ ran the golf tournament for the Blue Angels Foundation for several years. Recently, he created the Inspiring Warriors Golf program, and his mission is to inspire and assist wounded veterans through golf.In this episode, you'll hear from Russ Holder on:(00:13:14) The player-caddy relationship. Russ describes the circumstances that led to him becoming Bernhard Langer's caddy, and he refers to his role as part psychologist, part weatherman, and part nutritionist. (00:22.50) What golf can teach us about life. Russ explains the significance of the golfer's pre-shot routine and emphasizes the importance of developing an effective daily routine and sticking to it. (00:29:57) Creating a winner's mindset. We discuss how to keep a cool head after playing a bad shot, and Russ shares Tiger Wood's 10-second rule for addressing anger and frustration before moving on with his game.(00:42:00) Giving back through golf. Russ talks about his reasons for starting Caddy For A Cure, a charity that raises money and awareness for a rare bone marrow disorder called Fanconi Anemia. He also outlines his exciting vision for his Inspiring Warriors Golf program.(00:54:19) Taking action. Russ urges listeners to start acting on their ideas and explains how he was inspired by Zig Ziglar, who used to hand out coins inscribed with the words ‘round tuit' to encourage people to ‘get around to' whatever they were putting off.

ONCE UPON A GENE - EPISODE 162 Your Career and Personal Life Collide - Senior Vice President, Head of Development and Safety of Alexion, AstraZeneca and Smith Magenis Rare Disease Dad Gianluca Pirozzi Gianluca Pirozzi is a dadvocate and Senior Vice President, Head of Development and Safety at Alexion, AstraZeneca. His daughter has Smith Magenis syndrome.  EPISODE HIGHLIGHTS What is your connection to rare disease and how does it connect with your work? My childhood best friend was diagnosed with a rare disease called Fanconi Anemia and he died at the age of 19. I saw the world through his eyes and I learned so much about life because of him. He is also the reason I studied medicine. Years later, my daughter was diagnosed with a rare disease called Smith Magenis. At the time I was in drug development and I changed my career to focus more on rare diseases. What role do caregivers play in the rare disease patient journey and is their advocacy essential? The caregiver plays a major role- they're the depository of knowledge and understanding of the disease. The caregiver best understands the impact of the disease on a patient's day-to-day life. Advocating through fundraising, organizing family conferences and participating in registries is important.  How has your perspective of pharma changed since becoming a rare dad? Being in the pharma business, I know how expensive it is to run clinical studies and clinical research. As a caregiver, I defend access for as many patients as possible, but I also know that without a return of investment, there would be no research that leads to advancement or development of rare disease medicine. What aspects of being a rare dad are you grateful for? I'm grateful for being reminded everyday of what is truly important in life. When I see the struggles my daughter has with simple things, she also has gratitude and happiness when she succeeds with simple things. What does it take to prepare for a family trip? We have to think steps in advance, thinking about what time we will travel so we are planning around my daughter's best time of day. We talk to the doctor about medicine to help her relax and sleep. We bring her special bed and medical stroller and call the airline ahead of time to accommodate. It's a complicated process and we plan for challenges the best we can, bearing in mind that we will also have beautiful memories and everyone will have a good time. TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Interested in advertising on Once Upon a Gene? Email advertising@bloodstreammedia.com for more information!

This episode talks about all the complications and problems that a patient may encounter within their Post Transplant journey, as well as some ways to treat and deal with them as they arise. Listen in to learn and understand more on what Post Transplant patients endure before they reach that very exciting Day 100. Be sure to spread the show around to anyone you think may enjoy it, and help the show reach those people who love these stories. Follow the action here;Website - https://dayzero.buzzsprout.com/ Instagram (Day Zero) - https://www.instagram.com/dayzero_podcast/Instagram (Personal) - https://www.instagram.com/chadmc_23/Facebook - https://www.facebook.com/chadmc02

In this episode, we talk about the Ronald McDonald Charities and the amazing work they do around Australia, and the World for families with seriously ill children. Tune in to learn about Ronald McDonald, and learn a bit about the amazing stuff they do. In the second half of the episode, we begin exploring the memories I made during my stay there. Get ready for some giggles, smiles, and tears during this episode.Learn more about the Ronald McDonald Charities here:https://www.rmhc.org.au/Or support them here:https://www.rmhc.org.au/how-you-can-help?current=/node/6As always, to stay up to date follow along here:Linktree - https://linktr.ee/dayzero_podcastInstagram (Day Zero) - https://www.instagram.com/dayzero_podcast/Instagram (Personal) - https://www.instagram.com/chadmc_23/Facebook - https://www.facebook.com/chadmc02

In the 10th episode of Day Zero, we begin to explore the post-transplant treatment received. For this episode, we won't dive too deep into the medical treatment side of things, but have a general run down of my immediate memories from that time, in a raw episode where I talk and share this time. This will be the beginning of a short series as there is a lot to unpack during this part of my medical journey. Follow the action here;Listen Here - https://linktr.ee/dayzero_podcastInstagram (Personal) - https://www.instagram.com/chadmc_23/Instagram (Day Zero) - https://www.instagram.com/dayzero_podcast/Facebook - https://www.facebook.com/chadmc02

This episode is focusing on Day Zero, much like the last. However, in this episode, we will talk about my memories and how I remember the day going. The good, the bad, and the boring. This episode walks us through the day of events and goes into depth about how I felt during the Transplant. Follow along with the action here;https://linktr.ee/dayzero_podcastFacebook - https://www.facebook.com/chadmc02Instagram (Day Zero) - https://www.instagram.com/dayzero_podcast/Instagram (Personal) - https://www.instagram.com/chadmc_23/

In this episode, let's begin talking about that one big day, Day Zero. We will explore the very interesting medical information behind Stem Cell Bone Marrow Transplants and how they work so that once we move into my personal experiences of the day, everything being spoken about is understood and appreciated. This is the beginning of a major part of the journey!Follow the action, or get in touch here:Personal Instagram - https://www.instagram.com/chadmc_23/Day Zero Instagram - https://www.instagram.com/dayzero_podcast/Facebook - https://www.facebook.com/chadmc02https://linktr.ee/dayzero_podcast

In this episode, we will talk through the first few weeks I spent in Hospital, and in isolation. We will explore my experiences with Chemo, what I was feeling, and look at a general overview of what this part of the journey was like for me. If anyone has any questions feel free to contact me through my social media accounts and ask away!Follow the action herehttps://linktr.ee/dayzero_podcast

In this episode, we will talk about the move from my hometown to Sydney and what happened when I first arrived. Listen in to hear what the preparation days were like before I was admitted, and what those first few days in isolation were like. This is leading us into the big "Day Zero" episode. Follow the action herehttps://linktr.ee/dayzero_podcast

In this episode, we will talk about what Fanconi Anemia is, and what a FA diagnosis means for the patient. Tune in to learn about this very rare and life-threatening illness ahead of diving deep into my very own survival story. Follow the action here https://linktr.ee/dayzero_podcast

In this episode, we speak about what my life looked like growing up. It nicely complements the first episode that was released in just building that picture of what I looked like growing up, and what my life looked like. This won't be the most exciting episode within the show, but I feel it will allow us to dig deeper, and allow the audience to connect a little more when we start to really get into my journey. Thank you so much to everyone who has been listening along, and reviewing the show. It really does mean a lot to me. Follow the action here - https://linktr.ee/dayzero_podcast

Episode 439. Investigating myself. Topic: Fanconi anemia. What is anemia and what causes it? What is Fanconi anemia? How common is this condition and how is is treated? Can you find out if you carry this disease on a common commercial genetic test? What about the 18 other genes involved? Twitter: @3minutelessonEmail: 3minutelesson@gmail.comInstagram: 3minutelessonFacebook: 3minutelesson New episode every Monday, Wednesday, and Friday! Find us everywhere podcasts are found.

This is part two of the interview with my mother. In this part of the interview, we dive deep into my treatment and time in the hospital and gain an understanding of what it was really like to be the mother of a very sick child in hospital. Listen in to hear about the strugglings she went through and the memories she has from this time. Be sure to leave follow, and feel free to rate the show on whatever platform you're listening, it really helps the show!Follow the action here -Instagram (Podcast) - https://www.instagram.com/dayzero_podcast/Instagram (Personal) - https://www.instagram.com/chadmc_23/Facebook - https://www.facebook.com/chadmc02/

In part one of this heartwarming interview. I speak with my mother about what the journey was like for her. We begin right back at birth and talk about everything leading up to my hospital admission (which we dive into in part two).  Listening in to this episode will be sure to pull on your heartstrings.Be sure to leave follow, and feel free to rate the show on whatever platform you're listening, it really helps the show!Follow the action here - Instagram (Podcast) - https://www.instagram.com/dayzero_podcast/Instagram (Personal) - https://www.instagram.com/chadmc_23/Facebook - https://www.facebook.com/chadmc02/

Welcome to Day Zero's very first episode. Today you meet your host, Chad McGovern, and learn a little about who he is and what his life looks like. He will share with you his life and prepare you to immerse yourself into the world of a young boy who's undergoing a lifesaving treatment for a very rare illness. The story begins here...In the next episode, we will hear from Michelle McGovern, a special guest, and the mother of Chad. In a heartwarming interview, Chad will explore what it is like for the parent of a young child going through such a serious battle, and give listeners an interesting, and holistic insight into her transplant journey. Follow the action and provide some feedback here -Website - https://dayzero.buzzsprout.com/Instagram (Day Zero) - https://www.instagram.com/dayzero_podcast/ Instagram (Chad McGovern) - https://www.instagram.com/chadmc_23/Facebook (Chad McGovern) - https://www.facebook.com/chadmc02/

This is your official Trailer for Day Zero. The Podcast where I, Chad McGovern, share my survival story in hopes of inspiring my listeners. Day Zero will be launched on July 1st, 2022. I can't wait to share my story with you all!  SocialsInstagram - dayzero_podcastInstagram (personal) - chadmc_23Facebook - Chad McGovern

Laurie Strongin's son Henry passed away at the age of 7 from the blood disorder Fanconi Anemia in 2002.  During Henry's battle with this disorder and after he passed away  Laurie worked very hard with the United States Congress, which included  polar opposites Nancy Pelosi and Newt Gingrich to try and pass the Stem Cell Enhancement Research Act which would have helped Henry during his health crisis. Laurie appeared on Nightline, wrote an op-ed piece in the Washington Post criticizing then President Bush for vetoing the legislation, and eventually took part in a White House Ceremony with President Obama who lifted the ban on the funding of the desired bill in 2009.Laurie also started the Hope For Henry Foundation which directly impacts Pediatric Cancer patients as it looks for ways to make their hospital stays as comfortable and pleasant as possible. This foundation has helped 74,000 kids and the  Hope For Henry Program is now in 20 hospitals around the country with definite expansion plans on the horizon.

Chris Landry joins Nuno for the Texas A&M scouting report. Then Kristin Rayborn from Kids Frist Fund come on the show to talk about the important strides made to tackle Fanconi Anemia and what it means to coach Jimbo Fisher. To end the hour Coach G joins Nuno to talk Aggie Soccer and what the Aggies need to do to get another win on their record.

“It was a life or death... that was our life and we rose to the occasion.” Katie, Certified Child Life Specialist talks with Laurie Strongin from Hope for Henry. We talk about: +How parenthood started out with hearing the news no parent wants to hear +How Laurie's growing family lived out of hotels and Ronald McDonald Homes for years +The impact her first born's death has had on his siblings +How the first birthday without a “birthday boy” sparked a mission that has reached over 55,000 children in hospitals. Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here. Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child's unique experiences. We give you strategies to support yourself and your family through life's challenges. We are so glad you are here. Child Life On Call | Instagram | Facebook | Twitter

Two of Haydee Marshall Navarro's siblings passed away from Fanconi Anemia, a rare genetic disorder at sixteen and twenty-one years old. Haydee shares how she learned to always "show up" in her relationship with God and allow God to heal her broken heart. 

February is rare disease month, and February 28th is rare disease day.  Join me as we discuss the rare disease Fanconi Anemia with 16 year old Aurianna and her Mom Natalie.  Aurianna shares her story of being diagnosed with Fanconi Anemia at age 8 and what the course of management of this disease looked like during this challenging time.  Learn all about this rare disease and how you can help assist in bringing a positive change for kids like Aurianna.  You don't want to miss this episode!!#fanconi #fanconianemia #bethematch #bonemarrowtransplant #cordbloodawareness #rmhc #rmh #gocampsunshine

Described by his caregiver as a “mystic”, Sean's been stripped down to nothing. He's lost his job, he's infertile, and he often can't take care of anyone or even play with his daughter. In our conversation he asks himself, “if he is nothing to this world, is he worth the dignity and the resources it has to offer?” His answer will inspire you! Diagnosed at the age of 32 with a rare condition called Fanconi Anemia, cancer is a “no end in sight” reality for him, his daughter Maya, and his spouse/primary caregiver Allison. He's had cancer of the gums, throat, tongue, bladder, and over 150 occurrences of skin cancer. He's experienced over 10 years of treatment and literally thousands of appointments including a bone marrow transplant, having his tongue rebuilt from a flap of his arm and the removal of his bladder and prostate. His wife Allison, inspired by her experiences with Sean, created a blog and online community for caregivers called The Negative Space. As a result of her work she's become a sought after thought leader and speaker on caregiving. You can follow the their day to day ups and downs on FB and IG at @negspacelife. You can learn more about the caregiving coordination tool that Sean shares in the episode at https://www.ianacare.com/.

Calista Sellar is in haar Graad 3 jaar, Oktober 2014, met Fanconi Anemia gediagnoseer – ‘n baie raar genetiese kondisie wat die beenmurg affekteer en so die vervaardiging van alle soorte bloedselle in die liggaam. Sy moes elke 4 tot 6 maande vir bloedtoetse gaan om haar plaatjietelling te monitor en dan ook elke 12-18 maande vir ‘n beenmurgbiopsie. Calista was redelik stabiel tot Mei 2019 toe haar plaatjietelling gedaal het tot nul. Haar beenmurg was heeltemal uitgeput. Die mediesefonds het aangebied om Calista se ouer broer, Joshua te toets as beenmurgskenker en wonderbaarlik was hy ‘n 100% geskikte skenker. Kort na haar laaste vraestel in November is sy opgeneem vir ‘n week se chemo en toe die oorplanting op 4 Desember 2019. Sy was 8 weke lank in die hospitaal. Het selfs haar 15de verjaarsdag daar gevier. Ons GROOTfm span het saam met haar Hoërskool Centurion maats gekonkel om vir ons eerste JouMenseMyMense projek vir die jaar vir Calista te gaan verras. Die video van die Graad 9 groep was opgeneem, stemboodskappe van haar vriende en toe, na eintlik so ‘n lang stryd en tog op die ou end so skielik, is Calista op 22 Januarie oorlede. Ons het gevoel dat ons steeds haar lewe wil herdenk… En sonder dat ons gevra het, het haar ouers, Lydia en Dominique gesê dat hulle ook graag met ons sal wil gesels. Na ‘n baie emosionele gesprek kon ons vir die gesin ‘n bydrae maak ten opsigte van die uitstaande mediese kostes, ‘n geskenkkaart gee van SPAR asook ‘n gebedskussing as ‘n tasbare stukkie liefde en troos wat kan agterbly met die woorde van Psalm 91 – “U is my toevlug en veilige vesting, my God op wie ek vertrou.” https://www.backabuddy.co.za/champion/project/calista-sellar

You win the fight by living your best life. By all means, Kyle had a typical childhood. His life was altered around 16 years old when he was diagnosed with Fanconi Anemia, a rare and terminal disease that affects the bone marrow. He has found immense growth and opportunity from the struggles, and has since graduated from CMU amid several subsequent health scares, is pursuing freelance photography, and is living a life full of laughter, delicious food, and self-care. Listen in as Kyle tells us his intimate and powerful story of his experiences with Fanconi Anemia, his bone marrow transplant, how he dealt with being so close to death, what “dancing” with disease actually means, and what his outlook on life is. What do we say to death? Not today. Let's dance. Support this podcast: https://anchor.fm/weeklywarriorpodcast/supportSupport this podcast at — https://redcircle.com/the-weekly-warrior-podcast/exclusive-contentAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy